Sunday, January 27, 2013


When I was 13 I was diagnosed with Blepharospasm. It is spasms in the eyelids. Doesn't sound so bad, right? We all get those tiny spasms in our eyelids from time to time. Well, that is now what Bleparospasm is. Think of when your eyes are dry and you do a long, uncomfortable blink that you hold your eyes closed for few a seconds. When my blepharospasm flairs up, I blink like that all day long. Sometimes blinks will come one after another to the point where I don't open my eyes for over 10 seconds. Not that long you say? Close your eyes for 10 seconds right now, (and remember when I do it I can't open them). Now imagine you are driving your car. 10 seconds is a long time!
In the last 6 years or so I have developed a new issue with it. Blepharospasm can also cause twitching in your nose, (think bunny face). When the nose twitching starts up it affects my breathing. The twitching causes me to blow air out of my nose, which messes up my regular breathing. You begin to feel like you can't breathe.
It is socially embarrassing, dangerous when driving, causes pressure in your head and neck, (which is uncomfortable and causes headaches), and the breathing issues are really uncomfortable as you can imagine.
I've read many different stances that say Blepharospasm can get so bad that you can't open your eyes, like ever. Then I read where it comes on for a few days then goes into remission for awhile.
I am in the second category.
I used to have to get Botox to control it, (side note: Botox was the most painful thing ever, so don't try it. awful!)
A few years back I got off of all medications, including Botox. I learned to control it cognitively- I learned that as long as I got enough sleep, I could keep the spasms at bay. My doctor said that I am extremely lucky and shouldn't be able to control it cognitively. Like I said, the biggest thing to prevent it is to get enough sleep. I can't talk about it without it flaring up, so I try not to talk about it. :) Also, when watching a show or movie where a character makes funny faces I have to look away because my cognitive controls weaken and it will flare up.
For the last 8 days I have been dealing with a flair up. Thankfully, it has only been with my eyes and not my nose, (my nose only occurs when I lose control of a flair up). Controlling flair ups is a little more difficult with Annie because she doesn't let me sleep when I need to. :) It is finally starting to go away now!
I find it crazy that I was diagnosed at 13, which was 13 years ago!
Do you or someone you know suffer with Blepharospasm? Any at home cures/preventions I should know about? :)


  1. I know just how you feel since I suffered for 2 years before the proper diagnosis and then went for botox. I stopped it after 2 treatments and later found a naturally organic health food that eliminated my spasms. Please go on my website and read more about how I am in 23 countries and 48 states helping dozens of others in the same way.

  2. Please go to the BEBRF web site for more information and the wonderful and very helpful support group. (Benign Essential Blepharospasm Research Foundation.
    Wishing you all the best,

  3. Hi, this is my first time seeing this site, I need to get in contact with you immediately, I have seen top docs all over, and none of them know whats wrong with me! I've had botox injections 4 times, so about 50 injections or so in total, and they do not help, in fact, I think they may have cause other facial spasms (nose especially) to begin to act up. I know it sounds like it isn't possible, but I'm honestly not sure right now. I've been dealing with this for 10 years give or take, and it completely affects and ruins my life. I cannot drive, have trouble reading, talking at times (slightly), moving in any way due to having to track whats around me, it acts up more when I move, wind and light affect it, and when I was a child it would act up and I'd have what I'd call episodes of lets say a couple days to a couple weeks, now it acts up all the time, just to varying degrees. I can still see thank God, but I cannot live a normal life. I need to get in contact with you as soon as possible please so I can talk with you about what treatments you've tried, other diagnoses you may have received, and what helps you. Thank you so much, and just know I know how you feel!
    Rob. PS If theres any way you could leave contact information, an email maybe? I would really really appreciate it.